New books in our library

In recent months the library has had less money to buy new books and it’s been hard to choose which books to buy out of all the new publications and suggestions from library members.

Here are our most recent new books. We’ve chosen ones on subjects we are asked for most frequently and we’ve received a few donated books too.

Books

  • L6700 Successful Social Stories for Young Children: growing up with social stories by Siobhan Timmins
    ISBN 9781785921124 2016
  • L6702 Toby and Sox: the heartwarming tale of a little boy with autism and a dog in a million by Vikky Turner
    ISBN 9781785032004 2016
  • L6698 The Out of Sync Child Grows Up: coping with sensory processing disorder in the adolescent and young adult years by Carol Stock Kranowitz
    ISBN 9780399176319 2016
    This is the latest book in the very popular series of the out of sync child books
  • L6699 Understanding Sensory Processing Disorders in Children: a guide for parents and professionals by Matt Mielnick
    ISBN 9781785927522 2017
  • L6671 Neurotribes: the legacy of autism and how to think smarter about people who think differently by Oliver Sacks
    ISBN 9781760113643 2015
    The Sunday Times Bestseller and winner of Samuel Johnson Prize for Non-fiction 2015
  • L6694 The Gentle Sleep Book: a guide for calm babies, toddlers and pre-schoolers by Sarah Ockwell-Smith
    ISBN 9780349405209 2015
  • L6685 More Than Words: helping parents promote communication and social skills in children with autism spectrum disorder by Fern Sussman
    This is an extra copy of a very popular title very kindly donated to us by a library member
  • L6708 Hope: celebrate your baby with Down Syndrome by Tania Khan
    Donated by the author
  • L6701 Special Educational Needs and Disability Discrimination in Schools: a legal handbook by Sarah Hannett et al, published by the Legal Action Group
    ISBN 9781098407764 2017

DVD

AV6691 Autism and Me by Rory Hoy
This is a very good dvd of a television documentary, explaining what it’s like to have autism, that is often recommended to people after their child has been diagnosed.

Children’s Books – ages 5 to 8+

  • C0266 Autism Superheroes by Johanna Manikiza, published by ASD Info in Wales
    Non-Fiction explaining autism to children (bilingual – in English and Welsh)
  • C0267 Autism Superheroes Comic Strip by Johanna Manikiza published by ASD Info in Wales
    Fiction explaining autism to children (bilingual – in English and Welsh)
  • C0270 Emily’s Sister by Michele Gianetti
    Fiction for the siblings of a child with dyspraxia and sensory processing disorder
  • C0269 My Book of Feelings by Tracey Ross
    Non-fiction explaining different feelings to children
  • C0268 When My Worries Get Too Big by Kari Dun Buron
    Non-fiction explaining anxiety and relaxation to children with developmental disabilities

If you are not already a member of the library fill in the form on our library page.

Sleep Seminar Gives Advice on Aromatherapy, Mindfulness and Massage

We recently held a Sleep Seminar in Leeds at the Mencap Centre. The theme of the day was supporting sleep through mindfulness, aromatherapy and massage.

Alongside a presentation from our own Sleep Practitioners was Lois Skilleter, from Earthereal of Yorkshire therapies. Lois gave a great presentation on each topic and everyone eagerly took part in the practical demonstrations of either hand massage or head, neck and shoulders in the afternoon, with the support of Lisa and Amanda, Lois’ students. This provided a wonderful relaxing and enjoyable end to the day for parents and professionals, whilst a special mention must be made to our Sleep Practitioner,  Laura MacDonald  who selflessly put herself forward to be Lois’ demonstration model!

We also had Phil Truby from Yorkshire Sport Foundation talking about how they support children and adults who have disabilities to access sport and activities, as well as the positive impact that has not only on their fitness but on improving their social networks and emotional wellbeing.

We had so many positive comments about the day, here are just a few:

‘After 10 years of living with a child with a sleep disorder, I feel that despite thinking we had tried everything, we learned new techniques.’

‘I suffer from ticks and verbal shouting and was terrible on the journey to the seminar. I soon calmed down with the welcoming environment, lovely staff and relaxation exercises. Even my husband, who initially thought it was nonsense, benefitted from the mindfulness exercises.’

‘It has given me the confidence to go and try these things at home.’

‘Lots of ideas that a frazzled, sleep deprived mum would not consider.’

‘Having been shown how to massage, this will be very useful. I will definitely be doing this with my son.’

We were very grateful to have the event sponsored by Irwin Mitchell, who also very kindly provided the lunch, which was absolutely fantastic and much appreciated by everyone who came.

A huge thank you also to the staff at the venue who went out of their way to help us and everyone who contributed to make the day such a success. There are definitely a few children who will benefit from receiving their parent’s new found skills!

You can download handouts from the day below:

Aromatheraphy and Massage Handout Mindfulness Handout

Brody, Me and Global Development Delay

Brody

Brody

Laura is mother to 5 year old Brody who, despite having lots of health issues, has no definitive diagnosis. Laura writes about their journey as a family in her blog Brody, Me and GDD. In this blog post, Laura explains their journey as a family.

“Our beautiful Brody entered the world just over 5 years ago. He passed all of his newborn tests and was a really content and happy baby. I was completely unaware of undiagnosed genetic conditions back then and the journey we were about to take together. He was, and still is, is a total joy (forgetting about when he has a tantrum of course!).

I began to notice that he wasn’t developing typically when he was a few months old. A classic case of mother’s intuition coupled with all of the baby and toddler classes I signed up to.

First there was Water Babies, where all of the other babies looked ahead when they were placed on their tummies and held underneath their chest in the water. Brody struggled to keep his head up at all. I’d go back to the changing room afterwards amazed at how all of the other mums would let their babies sit on the hard floor with a towel wrapped round them whilst they got dressed. Not scared of them falling back and hitting their heads at all – because they didn’t fall back.

Then there was Rhythm Time where all of the babies babbled and waved on queue. As the months went by they were able to perch on their mum’s knees with ease and understood to go and get their “rhythm sticks” out of the basket and when to put them back. I’d wedge Brody in-between my legs so that he was well supported and the woman who ran the class would kindly pass me our rhythm sticks. More often than not, I’d swallow the lump in my throat as another child took pleasure in taking ours back to the basket afterwards.

Next up was Toddler Sensory. The last class I put myself through. Where all of the toddlers were able to walk along the obstacles, understand the basic games, attempt to sing along to songs and eat the snacks without gagging or throwing up.

Honestly, those baby and toddler classes were heart breaking because the worry back then was unreal. One of the hardest stages of this journey was when I just knew something wasn’t quite “right”, but family, friends, and health professionals tried to convince me otherwise.

He was “just slow” and “a typical boy”.

And the constant vomit that we experienced on a daily basis and inability to eat solid food was just reflux. Food aversion and delayed speech? Apparently also refluxes fault.

Then just before Brody turned two, he had a cluster of seizures and was hospitalised for a few days. It was a pivotal moment for us as a family. The health professionals began to take notice and I was told he had Global Development Delay. We had no answers, but a list of new people in our lives – paediatricians, an OT and a physiotherapist, to name but a few.

Lots of parents have similar journeys and tests go on to reveal a diagnosis. However, our journey has been one that’s lacked answers. What we do know now, a few years on, is that Brody has a learning disability, autism and epilepsy. He also has low muscle tone and hypermobile joints. But Doctors can’t find a unifying diagnosis to explain his disabilities and symptoms so he remains primarily undiagnosed, despite lots of tests.

We are part of a genetics study called the DDD (Deciphering Development Disorders) study, but this may not bring us answers and can take years to get results. I’m already knocking on genetics door to get us on to the 100,000 Genomes project, but of course, it’s never that straight forward. We’re on a waiting list and apparently it’s “amber”.

We are living in limbo.

But I know we’re not alone thanks to a charity called SWAN (Syndromes Without A Name) UK. Amazingly, it’s estimated that 6000 children are born every year in the UK without a diagnosis to explain their disabilities. And many of these children remain undiagnosed into adulthood.

We may never get a diagnosis.

That’s not easy to come to terms with. I love Brody with all my heart and I know that everything happens for a reason. But sometimes I wish I knew what that reason was. No diagnosis means no prognosis after all. Still, having others to talk to who can relate really helps. It can make you feel less isolated in a world of unknowns.

SWAN UK is the only dedicated support network for families of undiagnosed children in the UK and it’s so important to me that other families know that it exists.

The mum who is currently attending the baby and toddler classes, noticing gaps in her child’s development and the difference between them and their peers.

The mum who’s told everything is “just reflux”.

The mum who’s told that boys are “just lazy”.

The mum who is knocking on doors but not yet being heard.

The mum who’s just heard the words Global Development Delay in a white walled Doctors room, or a more honest “we don’t know”.

And the Dads too of course!

I want them to know as soon as possible that they’re not alone. I wish I’d known that sooner. It may not change the path that you’re on, but it will definitely help you on the journey.

To find out more about SWAN UK visit www.undiagnosed.org.uk or email joinus@undiagnosed.org.uk.

And if you want to follow our journey, you can find us at Brody, Me & GDD on WordPress, Facebook and Twitter“.

Don’t forget you can also give our freephone helpline a call on 0800 328 1159 if you need help or advice, or visit our website.

Better Bedtime Routine

Our Sleep Practitioners provide support for families on a range of sleep issues. One of our Sleep Practitioners, Sarah Coldrey was recently able to Oscar settle into a regular bedtime routine. His mum explained how this has helped.

“I’ve just put Oscar to bed. It’s 9.15pm and I’m now sat downstairs enjoying peace and quiet while he settles… In his own bed, in his own bedroom, upstairs alone.

He may wake up once during the night. If he does, I will return him to his bed and he will go back off to sleep, usually within 10 minutes… no great fuss.

Nowadays, more often than not he does not wake during the night.

He will wake at around 6am and sometimes climbs into our bed for a cuddle before dozing for another hour. Some mornings he is awake a little earlier, at around 5am, but again dozes until it is time to get up. And on rare mornings he wakes up at about 6am and he doesn’t need to doze, so we get up.

But gone are the 4.30am-5.30am regular starts to our day.

Also gone are the two hours spent settling him every night, with one of us having to stay in his bedroom until he finally fell asleep at gone 10pm.

Gone, too, are the night wakings, often up to three or four times between going to sleep at around 10.15pm and starting the following day at 5am.

What we have now is something that, just a few months ago, was unimaginable.

Last August, Oscar was nine years old, a month away from his ASC diagnosis and had never slept the night through. He had always needed us with him to settle. He had always woken throughout the night. And very often he was awake for the day before sunrise.

And then we embarked on a Cerebra sleep programme with the lovely Sarah Coldrey, who visited us and gave sound advice about Oscar’s bedtime routine (we had a routine in place so we just needed to tweak it!), a plan to follow for settling and managing night wakings and, most importantly, the inspiration for us to succeed.

Sarah explained how what seemed like the unachievable was, in fact, quite achievable – slowly.

All we had to do was follow the plan. We were in it for the long haul, not expecting this to be a quick fix. But, just three months after starting the sleep programme, we were seeing results.

Our gradual withdrawal from Oscar’s bedroom as he settled turned out to be easier than we had ever thought possible. We’d previously attempted something similar but had given up because we had, in hindsight, expected progress to be much quicker.

This time we took baby steps – and they worked.

Oscar is now functioning much better during the day. He says he is ‘not as grumpy’ – positive proof that a good night’s sleep is good for everyone!

Thanks Cerebra, thanks Sarah!”

If you’d like some help from our Sleep Service you can find out more here.

Poppy to Take on Second Triathlon Challenge

Rob and Poppy

Rob and Poppy

Last year, eleven year old Poppy Jones realised her dream of competing in the Cardiff Triathlon. This was particularly challenging for Poppy as she has chronic lung disease and quadriplegic Cerebral Palsy. This means she can’t sit, stand, roll or support herself and life is a daily challenge for her, but having a life-limiting condition doesn’t stop her having fun.

Poppy’s Dad Rob helped make her dream come true by pushing/pulling her around the course using custom made equipment specially designed by our Innovation Centre (CIC).

The father and daughter team will be once again rising to the challenge, taking part in the Swansea Triathlon on 28th May.

Rob’s motivation for doing this is simply to help his daughter: “taking part in this triathlon is so exciting for her and psychologically it will really benefit her. She gets so frustrated at the limits her condition puts on her and this will really focus her mind on what she can do. Poppy doesn’t think ‘I can’t’ but rather ‘with a little help I can’. I’ve got my work cut out though as Poppy doesn’t want to just take part – she wants to win!”

The team at team at the Innovation Centre, who designed the equipment that allowed Poppy to take part in the Triathlon last year,  took this opportunity to re-design some of the equipment to allow Poppy to compete on an even larger scale.

“Last year, we designed a chair and boat in Poppy’s favourite colour – yellow,” says Dr Ross Head from the CIC.

“For this year’s challenge, we’ve modified both products to make them more efficient; to make them faster – and to change the look to match Poppy’s new favourite colour, orange!

“Poppy’s also grown a lot since last year’s triathlon and the boat we built last year was too small. So I redesigned the boat to be bigger, however this meant it would be heavier, so I started from scratch using everything I had learnt about hydrodynamics to ensure the boat would be fast, efficient and create the minimum resistance so that Rob could swim the course. This year’s boat uses a V-shaped tri- hull. This allows speed through the water but is given stability by the two smaller outrigger hulls.

“Poppy’s Triathlon Chair has also been upgraded to make it faster and more comfortable. The guys at V-Trak very kindly donated some high quality wheels to help them roll to the finish line. It has upgraded bespoke components which will ensure efficiency, a speedy transition from cycling to running and ensure Poppy’s safety.“

The CIC team recently tested the boat out on the water (see below for photos).

You can sponsor Rob and Poppy through their Just Giving page.

 

 

Improving early intervention for children with autism

Zarbanoo Rajput

Zarbanoo Rajput BA (Hons), mum to a 15 year old with autism and an active member of ABAAccess4all parental campaign discusses recent research on the use of early behavioural intervention for children with autism across Europe, and reflects on her own experience in the UK.

“Autism Spectrum Disorder is a developmental condition affecting language, communication, behaviour, and socialization. At one end of the spectrum, there are individuals who can live an independent life, at the other end, there are children who start their school life with little or no language, display challenging behaviours, cannot use the toilet and have severe learning disabilities. Inclusion in mainstream education is uncommon for children at the more severe end of the spectrum, they are likely to be educated in a special school or unit.

Our beginning

I am a mum of 15-year-old teenager with autism who received an official diagnosis when he was aged four and half. Whilst it was difficult to come to terms with this diagnosis, we quickly pulled ourselves together and asked ‘what can we do to help our son?’, ‘What is the best thing to do?’ This is where the madness began. Every professional we spoke to had a different opinion. We had no idea who was speaking the truth. It was extremely difficult to access accurate information from a reliable source, let alone be supported with the intervention approach, Applied Behaviour Analysis (ABA), we ended up choosing.

For more information about Autism and Applied Behvaioural Analysis (ABA) please see Professor Richard Hastings blog ‘What is ABA for children with autism for?’

Early intervention across Europe

I was thinking back to our family’s experience when reading a recent research study: Use of early intervention for young children with autism spectrum disorder across Europe.(1 ). The study was written by a total of 40 researchers from 32 Universities across Europe. The purpose of this research study was to get a picture of the use and the weekly number of hours of early intervention/therapy provided for young children with autism spectrum disorder (ASD) in a number of European countries.

Parents from 18 European countries took part and completed an online survey, which asked about current use of intervention (type and number or hours per week) received at home, school and in a clinic setting such as a child disability clinic. In total, 1680 parents who had seven-year-old children or younger with autism spectrum disorder took part. Only parents of children up to the age of seven were in the study as by this age the majority of European children have started school.

The type of interventions the study was interested in included: behavioural intervention, developmental and/or relationship based intervention, speech and language therapy, occupational therapy, other educational and psychological interventions, and parent training. When parents were asked about their use of a specific intervention type, it was noted that similar/identical therapy programmes were available with different names. Therefore, intervention examples were given specific to each country, such as Applied Behaviour Analysis (ABA) and Pivotal Response Training (PRT), when asked within a broader category question such as ‘is your child receiving behavioural intervention?’

The study found that there is variability in the use and intensity of early intervention between European countries. Seventy four percent of parents from the UK reported that their child received an intervention. Indicating that 25% of children in the UK were having no early intervention at all. The average intensity of early intervention in the UK per week was 6.97 hours. Poland was found to have the best early intervention rates in this study, with 98.7% of children having some form of intervention before they are 7 years old.

Eighteen percent of parents of children with autism from the UK were reported to be receiving a behavioural intervention (7.54 hours on average per week), 8.1% a developmental or relationship based intervention (4.57 hours), 62.2% speech and language therapy (1.11 hours), 26.1% occupational therapy (1.24 hours), 23.4% other educational and psychological intervention (7.93 hours) and 23.4% were receiving parent training (1.61 hours).

The study concluded that while there is evidence that each and every child with autism needs to access individualised, multidimensional and multi-disciplinary intervention, almost 10% of parents who took part in this study throughout Europe, reported no early intervention at all for their child. The UK was one of the worst performing countries, with 25% of children studied receiving no early intervention. The authors reiterate the importance of training professionals in identifying and treating ASD as early as possible so families are not left unsupported in day-to-day life.

Our experience of early intervention

The study outlined above suggests that children receiving behavioural intervention in the UK are receiving an average of 7.5 hours of therapy per week. While this is a good start only 18% of UK parents access this level of behavioural intervention. This number is low and reflects our own experience as well. Currently, post diagnosis, parents are referred to Early Bird and Early Bird Plus programmes, which are run by the leading autism charity, the National Autistic Society (NAS). Referrals are also made to other services such as Speech and Language Therapy, Occupational Therapy, Educational Psychology, and specialist Communication/Autism Teams. We received a diagnosis back in 2005-2006. Note, no referral was made to a behavioural specialist. It seems ABA or other evidence based behavioural interventions are not routinely offered by the NHS for young children in the UK. Reading this, one might think how lucky we are to have so many services available to our families. Unfortunately once you go through them all, you discover that, it is all flash and no substance.

Once we managed to take the diagnosis in, we started reviewing literature about autism interventions. The child psychiatrist we saw at diagnosis said that the more the child’s language develops, the better the prognosis. We were very concerned about Elias’ future. Aged four and half at diagnosis, Elias though had some language, was very far behind his peers. He couldn’t label colours, numbers, he had no understanding of phonics, and had major problems with haircutting and bath time, to name a few. Our family needed help, Elias needed help, help I was hoping to find going through the Early Bird Plus programme. Unfortunately we didn’t see the progress we were hoping for, so we began looking elsewhere.

We were fortunate to have heard about someone who had a special educational needs tribunal bundle to share with parents. The wealth of information available in this bundle opened up our eyes. There were studies showing positive results for children with autism receiving an ABA programme, including one, which was focused on the four to seven age range, which applied to us. Other studies were for younger children. Overnight, we became familiar with names of researchers and research studies we would never have known were out there. However, the minute we started mentioning to professionals the term “ABA” and our interest in using this approach with our son, all doors started to close in our face. We were steered towards a programme called Treatment and Education of Autistic and related Communication handicapped Children, also known as project TEACCH. ‘What did we do wrong?’ From our perspective, we made an educated decision about the best intervention option for our child, for which we were punished. We strongly feel more evidence based early intervention in general is needed in the UK, with currently too many children and families missing out.

Parents working together using research evidence

In the UK, many parents of children with autism I have met are very unhappy about the situation with autism diagnosis and early intervention, hence the need for ABAAccess4ALL campaign. ABA Access4All aims to improve UK understanding of and access to professionally managed ABA therapies for children with autism and other disabilities.

Many parents I have spoken to feel they have been misled about ABA and are angry about their child/children’s precious time being lost. Professional recommendations about early intervention for children with autism in general suggests that maximum gain can be made between the ages of two to four. However, diagnoses are often provided late or when early diagnosis is made, accurate information about effective interventions is not given to parents.

I believe that parent-led campaigns for UK services to make available evidence-based approaches for children with autism are an excellent way to use research evidence to give children the best start in life. ABAAcess4all is an example of one such campaign with an evidence-based focus. We will continue to strive for better services in the hope that all children and families receive what they need without parents being driven to bankruptcy, physical and mental exhaustion, and experiencing significant strain on their family relationships”.
©Zarbanoo Rajput 2016, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

References

1. Salomone, E., Beranová, Š., Bonnet-Brilhault, F., Lauritsen, M. B., Budisteanu, M., Buitelaar, J., … & Fuentes, J. (2015). Use of early intervention for young children with autism spectrum disorder across Europe. Autism, Vol 20 (2) 233-249

1000 Families Study – Age Range Extended

Are you the mother, father, or caregiver of a child aged between 4 and 15 years, 11 months who has a learning disability?

Our 1000 families study, carried out at the University of Warwick, is exploring the experiences of family members who live with a child with a learning disability.

The study has recently received permission from the NHS Research Ethics Committee to extend the age range. We can now include children in the study if they are between the age of 4 and 15 years and 11 months (previously 4 and 11 years and 11 months). We heard from a number of families who would have liked to take part, but were unable to because their child was between the ages of 12 and 16 years. If this is you, we’d  love to invite you to get involved.

We are really keen to survey at least one person in the family (especially, a mother and a father) to explore whether family members have similar or different experiences and capture the experience of the whole family. We want to make this the largest study ever of families of children with learning disability in the UK and help shape future information and support.

University of Warwick logoIf you are the parent/caregiver of a child with a learning disability between the age of 4 years and 15 years and 11 months and would like to take part in a large scale family research project, please follow this link to find out more and complete the online survey.

If you have any questions please don’t hesitate to contact the research team on familyresearch@warwick.ac.uk or call 02476 524139.

 

Angelicus Celtis Wow Britain’s Got Talent Judges

Angelicus Celtis during one of their shows

Angelicus Celtis during one of their shows

Our Ambassadors Angelicus Celtis wowed audiences on Saturday’s Britain’s Got Talent with their stunning rendition of Nessun Dorma.

Angelicus Celtis are avid supporters of Cerebra and are always eager to be involved with the local community. They recently held a successful “Sing and Play” event where they invited our families to come along for a morning of singing and fun.

They have also raised money for Cerebra through several of their concerts and supported us at several major events.

The choir is made up of a group of school girls from Llanelli and entered the competition determined to try and win for their hero teacher Mr Williams, who was recently in a car accident. Mr Williams and his wife came up with the idea of forming Angelicus from the ranks of the Hywel Girls’ Choir & Hywel Boy Singers.

They have done Mr Williams proud so far but now they need your help! They need your support to help them win Britain’s Got Talent! Every vote counts and will help them get to the final. It’s really easy to vote, all you have to do is download the Britain’s Got Talent app for your smartphone or tablet and follow the instructions when voting opens during the live shows.

 

 

 

 

 

 

Let’s get them to the final!

Watch their emotional first audition:

 

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Leah Makes Sense of Her World

The whole family!

The whole family!

“Leah turned 5 in February and she has a diagnosis of severe global development delay, vision impairment, hypermobile joints and autistic features. When Leah learned to walk just before she turned 4, it was a magical moment for us.

Leah lives with me (mum- Michelle), Dad (Mike) and brother Ashton. I’m not going to lie, life is hard and we live on a emotional roller coaster that has, at times, really tested us.  Leah is our world and she has changed our life and made us better people, but having a child with additional needs is challenging in so many ways. It makes every aspect of family life harder.

Leah has no sense of danger, you could say she’s on a level with a 9 month/1 year old’s understanding and is into exploring the world. But as she is 5 years old and growing fast, it can be very challenging.

Where do I start trying to describe our beautiful girl who is a mystery to so many? You really have to step into Leah’s world to work it out! Anything sensory, music, eating, water, light up balls and throwing things and exploring are the things Leah loves to do. Leah has no play skills other than playing catch with us but even then she will throw the ball away from us – normally into a narrow corner somewhere that we can’t get to! Leah is non verbal and as yet we haven’t been able to find anyway to communicate. She is good at taking your hand though and leading you to where she would like to go.

Leah attends a amazing school in Poole. They have really helped us, along with other professionals, to understand her world. We have become experts in learning through the senses!

Michelle and Leah

Michelle and Leah

Leah is our beautiful girl who has shown us how to parent in a different way. Our son Ashton is fantastic with his sister and we are so proud of him. Sadly lots of times we can’t always be the parents he deserves and that makes us sad.

Leah often gets frustrated with not being able to communicate but has learnt that if she pinches us she gets a reaction so unfortunately we get a lot of this at present. Screaming is another behaviour she has adopted.

I have had some fantastic support from friends and family but sometimes life can be isolating as taking Leah to peoples houses and going out can be so challenging. It’s hard not think ahead and how much harder life will be so we try so we just try and stay in the  present.

We are currently trying to get support from social care to see if we can get some respite. It’s not something I thought we would never do but we need to be strong to care for Leah and getting some days to recharge are what we sadly need. Unfortunately I think it’s going to be hard as so many cuts have been made.

We are in the process of adapting our house. Leah can’t get up and down stairs and all the lifting has given me a bad back. We are also putting gates in place to block off kitchen as Leah’s exploring just isn’t the safe in kitchen.

Overall we are happy, apart from some days (we all have them). Leah has taught us all to look at life very differently and become more understanding people. Leah has developed more than I ever thought she would and we pray she will continue to improve”.

Written by Michelle, Leah’s Mum.

Michelle recently attended one of our advice clinics run by Regional Officer Lilly Fahey. We hold lots of information and advice events throughout the year. Keep an eye on our What’s On page for the latest events in your area.

Sleep Walking to Success

The walkers before they set of

The walkers before they set off

On Saturday 6th May we held our second walk to the top of Pen-y-Fan in the Brecon Beacons to raise vital funds for our Sleep Service.

Following a safety briefing from the fabulous mountain rescue team, our brave walkers grabbed a glow stick each and, with an overwhelming sense of camaraderie, made their way to the summit!

This year, we were also joined by the Côr CF1 choir who not only braved the walk to the top of Pen-y-Fan but then entertained everyone with a few songs at the top. They were in fine voice, even after the trek up the mountain!

So far, this year’s Sleep Walk has raised well over £3000 and this will help fund our Sleep Service which aims to help families with children with brain conditions get a good night’s sleep.

We would like to say a big thank you to everyone who took part in the walk and for joining us on our journey to help families discover a better life together.